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Baby ER Resource Links
General neonatal facts/history General Neonatal Facts and HistoryNeonatology on the Web — An internet site geared to doctors, but with copious information useful to parents of preemies and ill newborns as well, including a glossary of all neonatal medications Center for the Study of Multiple Birth — Suite 464, 333 East Superior Street, Chicago, IL 60611. Phone: 312-908-9093. E-mail: lgk395@nwu.edu Stages of fetal development, by week — See what's going on, by month and week. Another site, the Visual Embryo, provides a similar tour. Miller Children's Hospital, Long Beach, CA — The setting for Baby ER. History of Neonatology — A fascinating collection of historical papers and material on the evolution of care of premature and sick newborns, maintained by Neonatology on the Web. Specific information on Pierre Budin, the French physician who pioneered many modern advances in the care or newborns, is available from the excellent site maintained by Dr. Paul Toubas, professor of pediatrics at the University of Oklahoma. Click here for the fascinatingly lurid history of how modern neonatology came to America via Coney Island, in a 1938 article from the New Yorker by the great journalist A.J. Liebling. Statistics — Reports documenting rising prematurity rates, rising multiple birth rates, and an extensive library of other topics from the National Center for Health Statistics at the CDC. Achoo — Health Care news gateway site with encyclopedic categories of information and links related to medicine. American Academy of Pediatrics — Principal U.S. organization of pediatricians and neonatologists has information packed site, lists of publications. NICU Guidebook for Residents — Read the official Johns Hopkins Children's Hospital NICU manual for doctors in training. PediatricLinx.com Neonatology Section — Breaking news of interest to neonatologists and anyone concerned with developments in this branch of medicine. Requires free registration. Family Centered Care — Some parents of preemies believe parents need to be more involved in decision making when it comes to care in the NICU. Nurse and preemie parent Helen Harrison, author of The Premature Baby Book, wrote this article, The Principles for Family-Centered Neonatal Care, which was presented at a conference sponsored by Preemie-L and the Alexis Foundation, and published by Preemie-L. More information on the conference is available at the Preemie-L web site under the conference title, Empowering Parents of Premature Babies.
Preemie and NICU Parenting InfoFor Parents of Preemies — Excellent introduction to the medical, physical and emotional challenges facing premature babies during and after their stay in the NICU, produced by the University of Wisconsin and The Center For Perinatal Care at Meriter Hospital, Madison, Wisconsin. Available in book form for $10 or free on the Internet. Meriter Hospital, Neonatology 6C, 202 South Park Street, Madison, WI, 53715. Preemie-L — A very complete and informative website for parents with children born six weeks or more early, and their family and friends. The site provides links to several excellent e-mail discussion groups. A separate E-mail group for parents of older former preemies is also accessible here, along with extensive fact sheets on the various health problems preemies can face and answers to frequently asked questions. Miracle Sam — One family's difficult and ultimately happy experience with their premature child, Sam, and the NICU. Section that explains how to touch a preemie while in the NICU, including an explanation of Kangarooing, should be read by all new preemie parents. Premature baby - Premature child — Maintained by preemie parents Rick and Allison Martin, this Web site provides an extensive collection of articles, resources and information from doctors, researchers and parents on all subjects related to prematurity, the special needs of children, coping with prematurity in the family, and what to expect not only in the immediate aftermath of premature birth, but in the months and years that follow. An excellent beginning place for the parents of preemies and their families and friends. Preemie Resource Page — Large list of publications, organizations, Web sites, and other resources maintained by Mary Searcy. Tommy's Cyber Nursery — "is one of the longest standing preemie sites on the Web (est. 1995).It features the amazing story of Thomas Clark King, born 15 weeks premature in 1994 weighing 1 pound 10 ounces — now a normal 40+ pound kindergarten terror! The site also features Daddy's Library which offers one of the most extensive collection of preemie, baby and parenting links on the Internet. Also maintains the Preemie Channel news site. After the NICU — Web site providing advice for parents of babies newly discharged from the NICU. PreemieParents.com — Web site reading room for parents of preemies, with special attention to questions that arise after leaving the NICU, on up to school age. From the authors of the highly regarded book, Your Premature Baby and Child: Helpful Answers and Advice for Parents, by Amy E. Tracy et. al. (Berkley, 1999). The Alexis Foundation — a non-profit foundation offering information and support services for parents of preemies, and involved in fundraising to promote research into new treatments for premature infants. P.O. Box 1126, Birmingham, MI 48012-1126. Phone: (877) ALEXIS-0. E-mail:thealexisfoundation@prodigy.net American Association of Premature Infants (A.A.P.I.) — a nonprofit, advocacy organization dedicated to improving the quality of health, developmental and educational services for premature infants, children and their families. PO Box 46371, Cincinnati, OH 45246-0371. E-Mail: feedback@aapi-online.org Bissell's Homepage offers information on two conditions often associated with premature birth: tracheotomies for home ventilation and cerebral palsy. Babiestoday.com — online magazine with general information and articles on infants, pregnancy, child care. Click here for small collection of articles on prematurity, the NICU and related issues. A similar, more popular site, good on general parenting, not so good on special needs kids, can be found at BabyCenter.com. So You Know Someone Who's Had a Preemie — Advice from the folks at Preemie-L, who run a support e-mail list for parents of preemies, on what to say and do, and what not to say and do, when friends or relatives have a premature baby. Preemie FAQ — Good, quick site of frequently asked questions, courtesy of Wesley Medical Center in Wichita, Kansas. Pumping Moms — Most mothers of preemies and infants in the NICU will be introduced to the joys and tribulations of the breast pump. Here's a site dedicated to them, with an excellent FAQ. Click here for additional information on breastfeeding the hospitalized baby. Emory Pediatrics — Excellent source of articles from Emory University Medical Center, particularly focusing on developmental care.
Cerebral Palsy and Other Neurological DisordersNational Institute of Neurological Disorders — provides information on the nature and treatment of cerebral palsy. PO Box 5801 Bethesda, MD 20824. Phone: (301) 496-5751 or (800) 352-9424. Click here for index of all neurological disorders. Cerebral Palsy Multimedia Tutorial — Web site maintained by the Children's Medical Center of the University of Virginia gives a thorough introduction to the illness, its treatment and its impact on children. United Cerebral Palsy Association — Nation's second largest health-related charitable organization provides extensive information on cerebral palsy and other disabilities. 1660 L Street, NW, Suite 700, Washington, DC 20036. Phone: (800) USA-5UCP (872-5827)
Retinopathy of PrematurityROP Support Group — Web site and E-mail discussion group on this serious eye disease related to premature birth, maintained by Dr. Scott Richards of the Country Hills Eye Center, 875 E. Country Hill, Ogden, UT, 84403. Phone: 888-EYE-CNTR. Growing Strong — Internet site maintained by adult former preemie with ROP. Web site provides separate areas with descriptive information on ROP and support information for parents of visually impaired children.
Congenital ConditionsGeneral: March of Dimes Birth Defects Foundation — Charitable organization provides extensive information, fact sheets and support services related to all genetic disorders. 1275 Mamaroneck Ave., White Plains, NY 10605. Phone: 888-MODIMES. E-mail: resourcecenter@modimes.org Genetic Alliance — Organization dedicated to providing information and support related to all genetic disorders. Internet site has a searchable data base of support organizations broken down by literally every disorder that can affect a child. Information also available by mail or phone. 4301 Connecticut Avenue, NW, #404, Washington, DC 20008-2304. Phone: 800-336-GENE. E-mail: info@geneticalliance.org Association of Birth Defect Children — Charitable organization that provides phone information, written materials, special reports and newsletters to parents and professionals about all kinds of birth defects, resources, support groups and environmental exposures that may cause birth defects. Has extensive list of fact sheets and E-mail list. Heart: Congenital Heart Anomalies - Support, Education and Resources, Inc. — 2112 North Wilkins Road, Swanton, OH 43558. Phone: 419-825-5575. E-mail: chaser@compuserve.com American Heart Association — Extensive information on congenital heart diseases and treatments. 7272 Greenville Ave. Dallas, Texas 75231 Phone: 800-AHA-USA1. Left Heart Matters — Information and support for parents of children with hypoplastic left heart syndrome. Click on the info link in the navigation menu for a superb online booklet explaining the syndrome and its treatment.
Other congenital conditions:Cleft Palate Foundation — 104 South Estes Drive, Suite 204, Chapel Hill, NC 27514. Phone: 800-242-5338. E-mail: clefline@aol.com Cystic Fibrosis Foundation — 6931 Arlington Rd, 2nd Floor, Bethesda, MD 20814. Phone: 800-344-4823. E-mail: info@cff.org. National Down Syndrome Society — Foundation provides extensive information and support for individuals with Down Syndrome, their parents and families. Comprehensive information on all aspects of the condition, related research, legislation and fact sheets. 666 Broadway, New York, NY 10012-2317. Phone: 800-221-4602. E-mail: info@ndss.org. Myotonic & Congenital Dystrophy Support Group International — 185 Unionville Road, Freedom, PA 15042. E-mail: tallships@usa.net Spina Bifida Association of America — 4590 MacArthur Blvd., NW, Suite 250, Washington, DC 20007. Phone: 800-944-3285. E-mail: sbaa@sbaa.org. Support Organization for Trisomy 18, 13 and Related Disorders — 2982 South Union St., Rochester, NY 14624. Phone: 800-716-SOFT. E-mail: barbsoft@aol.com.
Other Ailments Seen in and After the NICU; GrievingNational Information Center on Deafness — Gallaudet University, 800 Florida Ave., NE, Washington, DC 20002. Phone: 202-651-5051. TDD: 202-651-5052. E-mail: nicd@gallua.gallaudet.edu Gastrostomy Support — Information and support for parents of children with G-Tubes and other digestive disorders. Hydrocephalus Association — 870 Market St., Suite 705, San Francisco, CA 94102. Phone: 888-598-3789. E-mail: hydroassoc@aol.com Intraventricular Hemorrhage (I.V.H. Parents) — PO Box 56-1111, Miami, FL 33256. Phone: (305) 232-0381. E-mail: ronlondner@worldnet.att.net National Center for Learning Disabilities — 381 Park Avenue South, Suite 1401, New York, NY 10016. Phone: 888-575-737. The PVL Resource Center — Information on the neurological ailment, Periventricular Leukomalacia. 1195 Penfield Center Rd, Penfield, NY 14526. E-mail: reenie@computer-connection.net Grief Resources — March of Dimes fact sheets for parents who experience infant deaths, miscarriages and still births. See also this excellent article, from an Alexis Foundation symposium, is Grieving and Coping After the Premature Birth of Your Baby.
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